It’s All Go, Around Here!


A cooling image of the Dandelion fountain in the King’s Cross area of Sydney.

There seems to be a lot happening at the moment. Actually, one way and another, July has been quite hectic – well, in a Fibromyalgia sort of way. There have been several days each week with things booked in either for me or for FPR, which is unusual. For now, though, a breather is in progress with a visit to my Little Boy and his partner.

Venturing out of home can sometimes feel quite daunting, which is the case at the moment. I had a fall in the street, earlier this week, which shook my confidence. Two lovely young chaps came to my rescue – they reached me just before FPR. I think they must have rescued others as they asked me if I needed a minute before getting up and seemed to know how to help me to my feet. With the experience so recent, the journey ‘dahn saaf’ loomed large including, as it did, a taxi, a bus, a train, a plane and a car.

The taxi was straightforward. The driver was on time and, when we arrived at the station, parked just outside the door. The Rail Replacement Bus wasn’t quite so simple: I couldn’t get up the steps, even with help. I was thankful that the driver moved the bus so that I could stand on the kerb. That extra height made all the difference. It was kind of him to reposition the bus, but doesn’t he know that buses are designed so that passengers can mount from the pavement? Grrrr.

I had booked assistance for Manchester Piccadilly Station. (I had also booked it for Bolton Station but we disabled people mustn’t expect too much, you know.) No-one appeared when the Rail Replacement Bus arrived at Piccadilly but a member of staff offered me her arm to steady me as I alighted. Things improved after that as two security staff came with a motorised buggy to give assistance. They were pleasant and chatty and didn’t make me feel like a nuisance when I needed to go so slowly. Having sat on the train, the Train Manager came along and said she would help when we arrived at the airport. That was just as well as the assistance was booked for a later train! It was not a problem as the Train Manager went to alert staff of the earlier arrival. The railway staff wheeled me to the station entry concourse where two chaps from the airport arrived to assist with the transfer to Terminal 3. These were two more lovely men who were happy to chat. An added bonus was that on that beautiful, bright, but not too hot, early morning they took a route outside the terminal buildings. I can’t tell you how welcome it was to be outside on such a morning!

We went straight to Security, and through to the Passenger Assistance waiting area. I needed something to drink so joined the short queue at the coffee stand next to the waiting area. No sooner had I returned to my seat than another chap arrived to push me to the departure gate. As the gate was deserted when we arrived, I decided to lie down and rest for a while as I was feeling tired. I’m glad I did as it refreshed me.

We were called to the aircraft before other passengers. A platform lift had been requested but a chap came over and asked me if I thought I would be able to climb up the steps, as the platform was too big for the job. As it was a small turbo-prop there were only a handful of steps so I said I would try. He was pleasant and reassuring and said that he and another would be there to help me. I was very pleased that I was able to manage the steps along.

The cabin crew were most welcoming and attentive: I definitely felt well looked after! Another lady was being given assistance and received a similar level of service to that shown to me. We were asked if we would mind waiting until all the other passengers had alighted at our destination before we disembarked and we were happy to do so. Again, everyone was pleasant and helpful.

As for being collected by my Little Boy in his car… Unbelievably, Southend Airport allow just FIVE minutes’ free parking for collecting or dropping off passengers! And the car park is quite a step from the terminal building. That might be long enough for able-bodied passengers, but for anyone else, it is woefully inadequate. I feel a ‘Disgusted of Tunbridge Wells’ letter coming on.

And, tomorrow, it all happens in reverse! Wish me luck!




That’s Just The Way It Is


Around St. Mary’s Cathedral, Sydney, July/August 2013

(Do you know, it takes me longer to find and decide upon the photograph for each post than to write the post?)

The weather has been very hot for the past couple of weeks and I am very fed up with it. Mind you, the people who are or have been closest to me would be amazed at how well I have coped with it. Believe me, hot weather and Bossymamma is not a good combination! I have always told people that my sons knew not to annoy me on a hot day because I was likely to explode at them. In fact, my Big Boy alluded to that, in a lighthearted way, when he and his family visited at the weekend. As for my Little Boy, he is probably dreading my impending visit!

I don’t know whether it is my advancing years, the Fibromyalgia, or a mixture of the two, but I seem to be coping with the heat far better than previously. I can’t begin to explain adequately how awful the heat usually makes me feel: it sucks every vestige of energy from me and makes me feel lousy. Actually, I don’t want to explain it, because of how dreadfully it affects me, so that is all I shall say about that.

To get back to the present, the heat seems to have triggered a major flare-up of the Fibro-related foot pain. It is particularly bad in my heels and often makes walking more difficult and more painful. The situation is made worse by the swelling in my feet, which I suffer in hot weather. I do take medication to reduce the swelling and I sit with my feet raised, whenever I can, but none of that helps enough. In fact, the pain has begun to manifest in my legs, in the three or four inches above my ankles. ‘Snot fair! Don’t like sore feet! Actually, the pain has been so intense, at times, that it has made me yelp. It used to be that the foot pain was at its worst soon after I retired to bed, but that is no longer the case. I think it is equally bad in or out of bed, at the moment. Sometimes it seems to be worse when I am in bed, but I don’t know if that is because there is less to distract me from it when I’m lying there. Whichever way you look at it, the foot pain is being very unpleasant at the moment.

Fatigue has also been problematic over the past couple of weeks. Obviously, it is impossible to know how much is attributable to the heat but, regardless of the cause, it has been challenging. Generally, when the fatigue is playing up, I can gauge when I have enough energy to deal with a task. However, that hasn’t been the case during this heatwave. When I have rested, I get up and start on the task I have set myself, only to find that my body can scarcely manage to move. There have been numerous times, recently, when my energy has simply evaporated. At those times, the lack of energy, the exhaustion, the fatigue, or whatever you want to call it, has been painful. I don’t mean that it causes pain but, rather, that it is the fatigue itself is painful. It has been difficult to cope with. I am used to my energy disappearing – I would say “disappearing in a puff of smoke” but there generally isn’t enough oomphf for it to manage doing that! – but the last couple of weeks have been a whole new ballgame. And, rather like the Football World Cup, I wish it wasn’t happening!

Amongst all this doom and gloom there is a metaphorical ray of sunshine: I have been granted a Blue Disabled Parking Badge! I can’t tell you how relieved I am. The whole application process caused me much anxiety. I knew that the state I am in should mean I am entitled to a Badge, but the process has been a challenge. I was so fearful of my application being rejected. My ability to go out and about has been severely limited because of the fatigue and the problems I have with walking, but I worried a lot about how well I would be able to put that across when making the application. It shouldn’t be like that and it makes me quite angry that disabled are put in that position.

When I was working, my job entailed completing all sorts of application forms for clients (I refuse to call people ‘service users’!). I had a very good success rate for Disability Living Allowance and Attendance Allowance claims as I knew how to put across the difficulties people had in a way that showed their entitlement. However, it’s a completely different matter when applying for something on one’s own behalf, as opposed to someone else’s. I suppose it’s because it is oneself who is affected by the results. When completing a form for someone else, it is very much easier to be objective than when applying for yourself. Even so, I think the ‘system’ makes things unnecessarily difficult for disabled people. During everyday life, people (whether able-bodied or disabled) look at ways that they can manage to do a particular thing but, when faced with something that requires proof of ability, or lack thereof, they have to ‘un’ think their solutions and focus on their difficulties. That is not easy. It may have taken years, with several increasingly complex ways of adapting their method to enable them to carry out that particular task. Not only is it difficult to think back and remember the difficulties you’ve had doing something, it’s also very depressing. You’re faced with the knowledge that there are lots of things you can’t do in the ‘normal’ way. Applying for any additional help is a gruelling task and one that it is not undertaken lightly.

Having clawed my way up onto my soapbox, I will now crawl down the least precarious route to tell you of one other thing that has happened since my last post.

Whilst sitting in the waiting room at the Amazing Dr. A’s surgery, prior to my appointment with him, I noticed a leaflet about something called the Staying Well Team. Upon reading said leaflet, I discovered that the team is there to help people with things to make their day-to-day lives easier or simpler. As my day-to-day life has changed so much recently, I decided I would give them a call. A lovely lady called Dawn explained that their main target age-group is the over 65s. However, in view of my difficulties, she said she would visit me to see if they could do anything to help. The visit went very well and she made several suggestions, most of which I thought were excellent. She is going to return with an Occupational Therapist with a view to my having a grab handle to help me cope with the step up to our side door, an extra bannister on the stairs and a folding seat in the shower. All of those will be wonderful as I am struggling in those three areas. She also offered me a toilet frame. hm. Not impressed. Really don’t want a toilet frame. Don’t like toilet frames. They make me think of people who are frail and about to ‘pop off’. They really are for Disabled People. And, yeuch, all those millions of corners which would fill up with nasty germy things – revolting! I am not at all houseproud, but toilet frames seem like really dirty, disgusting things. (Oh, crikey. What will I do if I reach the stage where I have to have one?) I was gratified that FPR was happy to have the equipment installed, as this house belongs to solely to him. I was also pleasantly surprised to hear that the equipment will not cost us anything.

Dawn also had questions and suggestions about social activities and said she will send me some information with my Well Being Plan. I emailed her after our meeting to ask about nail clipping services (as I don’t really want to pay £28.00 a time to a podiatrist to cut my nails!) and she has said she will include that information, too. Apparently the aim of the team is to delay the need for social care intervention. Whether that will be result  case remains to be seen but, so far, what the team provides is looking good. Watch this space!


It Was A Cold, Dark Midwinter Night…


A cold, dark midwinter night

Actually, no, it wasn’t, it was a warm, clammy, near midsummer night, but you get what I mean.

As I type this, it is Sunday morning and the clock reads 02:13. I have just sat down with a cup of coffee and a chocolate caramel biscuit. I got up 10 minutes ago, having retired at 9.00 o’clock last night because I was so tired it was almost literally painful. Just a few hours earlier, FPR had commented on the fact that I had been more awake than on the previous two days. S*d’s Law has had a very busy week, this week.

I had my assessment for a Blue Disabled Parking Badge on Wednesday of this past week. I had been anxious leading up to the day of the assessment but adrenaline saw me through – probably too well. The Occupational Therapist I saw informed me that it will take about 14 days for the matrix to calculate whether or not I am entitled to a Badge.

I was a bit tired for the rest of the day, but not overly so: I suspect the adrenaline was still working its magic. However, Thursday and Friday were completely written off. In fact, on Thursday, I could barely keep my eyes open. I was so fatigued it was making me nauseous. I managed to crawl into bed at 8.30pm – and I mean ‘crawl’. The thought of having to climb the stairs almost had me in tears. Somehow I made it into bed whereupon I slept. In fact, apart from a ‘comfort’ visit, I didn’t wake until late.

Friday wasn’t quite as bad, but I wasn’t able to do much. I did manage to do a little food shopping and a few rows of knitting, but that was about it. Oh, and I stayed up late. When I say ‘late’, I mean later than the previous night!

On Saturday, I had an appointment with the chiropodist. I have reached the point where I am too stiff to be able to cut my toenails. I don’t want to ask FPR to do them for various reasons, not the least of which is his eyesight. I don’t want to say he is myopic because of the connotations of that word, but he does have very short sight. Anyway, I digress. I attended the appointment and returned home. I spent the day awake but doing little, apart from arranging my forthcoming journey to see my baby son and his partner. I didn’t feel particularly fatigued, but neither did I feel like doing much. After dinner, I knitted just three rows of a very small item that I have on my needles before becoming exhausted. I sat quietly, becoming more tired and feeling more unwell until I managed to make the decision to go to bed. [NB I have worded that sentence like that deliberately as it’s how it happened. It took an inordinate amount of mental energy to actually realise and then decide that I had to go to bed.]

S*d’s Law was also at work earlier in the week. Last Sunday evening I had planned to meet a friend at a film screening in Longsight and to give another friend a lift home afterwards. I had dovetailed my entire weekend to give me the best possible chance of not having to cancel and everything was going well… Then our next-door neighbours’ daughter decided to play with her karaoke machine: outside, about 15 feet from our living room window, from around 3.00pm to 7.00pm – when I needed to sleep! I could have cried. I hadn’t expected that I would need to sleep, although, when I realised that I did need to, I didn’t perceive it as a particular problem as I had plenty of time. However, given that the ‘performance’ had started and then continued until 7.00pm, it completely scuppered any chance I had of going out, as I needed to leave soon after 6.00. I was sorely disappointed, especially as it meant letting down two friends. I am so very lucky to have understanding friends but it doesn’t stop me feeling embarrassed and ashamed at having to let them down.

S*d’s Law and Fibromyalgia (and, of course ME/CFS, if I do have it) have a lot to answer for!


Moving Along


Beautiful reflections, seen on the journey from Honningsvag to North Cape, Norway

This week is all about moving along – life moving along and me… trying to!

Earlier in the week I went to see the Amazing Dr A. He looked surprised when he saw me hobbling in with my walking stick, understandably so. The last time I saw him, earlier this year, I was far more mobile but things have gone downhill since then. During my appointment he wrote a short letter in support of my application for a Blue Disabled Badge. I had, mistakenly, thought that the issuing authority would contact him for a report. However, when checking through the paperwork, I saw that I have to arrange for evidence from my GP. That d*mned Fibro Fog makes it so difficult to take in information. Grrr.

This evening, I decided to try walking to the postbox at the end of our road. I had a letter to post but didn’t want to have to use the car. I set off with my trusty walking stick at my new usual pace but it didn’t take long to slow down even more. I was shocked at how quickly I ended up walking so very slowly. I stopped to chat with a neighbour then continued on my way. I noticed that the camber of the pavement was making it more difficult for me to walk – I just couldn’t find my balance. I was going even more slowly and felt as though I was almost stationary on the final stretch, near the postbox. When I began the return journey it registered in my brain that I had been walking uphill. I could really feel a difference in my gait because of walking downhill. It isn’t much of a slope, but I definitely noticed the way it affected my walking.

Soon after leaving the postbox my left foot didn’t place well and I stumbled. You know when you lose your balance and you end up almost running because you can’t keep control of your feet? Well, that’s what was happening to me: I could feel myself heading for the edge of the pavement, towards the road. Yikes! It was scary. Somehow I managed to stop myself falling and to bring my left foot under control. I had to stop for a short while to gather myself. It had given me a fright. I set off again towards home. I was going extremely slowly but not tottering quite as much as on the way to the postbox. I decided to walk in the road because the camber of the pavement was causing me problems: it certainly helped, especially as my left foot was beginning to twist over. I can’t tell you how pleased and relieved I was to reach home!

Moving on, this week I have an assessment with an occupational therapist in relation to my application for a Blue Disabled Badge. I have been very anxious about the whole process: completing the online application form, fighting the fog to understand what is needed and now, also, the impending assessment appointment. The Amazing Dr A was very encouraging when I saw him but I still feel anxious. My boundaries have been shrinking because of my mobility difficulties and, without a Blue Badge, they are likely to shrink even more. It’s scary. I am pleased and grateful that FPR is coming with me to the assessment. He’ll have to wear his best “Calming Bossymamma Down” hat.


Old Wives’ Tales


Sydney Opera House from The Rocks

We’ve probably all heard an old wives’ tale or two, haven’t we? Do you remember, as a child, pulling a face only for your mother to say “you should be careful or the wind will change and your face will stay like that”? I must admit, I have never seen anyone whose face did actually stay like it!

I remember, many years ago, hearing or reading that each of us is most awake and active at the time of day when we were born. I can’t remember whether it was from a printed article, a TV or radio broadcast, or whether someone said it to me. I have no idea whether the idea has been looked at scientifically but I tend to think of it as a bit of an old wives tale. Anyway, that little gem found its own nook or cranny in my brain and slept there for years, just occasionally waking up and giving my mind a little nudge, before dozing off again.

This week, my pet snippet decided to poke its tiny head out. Just a quick “hello”, you understand.

I was born in the middle of the night, 3.10am actually, and there have been plenty of periods when I have been quite a night owl. The first such period I remember was when I was at primary school: for several weeks I would wake somewhere around 2.30 or 3.00am. I was wide awake and would go downstairs. I would get myself something to drink, and possibly a snack, then settle down comfortably in an armchair and read the daily paper. I remember my mother coming downstairs the first time this occurred, and asking me what I was doing. I simply said that I had woken up and was wide awake so had decided to sit downstairs and read the paper. As I wrote that it sounded rather precocious but it wasn’t meant to be: I was just answering her question. Well, she accepted that answer and went back to bed. And, just like that, the whole family accepted that I got up for a couple of hours during the night. As I said above, it went on for several weeks.

At various times in my life, I have gone through these periods of early morning activity. It may be more accurate to say that they happen in the middle of the night. As a teenager, one of my jobs at home was to do the ironing. My favourite time to do it was immediately after I had been out on a Saturday night. I would return home at something like midnight or 1.00am, entering through one of the bars in the pub we lived in. I would say ‘hi’ to everyone who was at that night’s lock-in, then go through to the living quarters and do the ironing. I would have the radio blasting out (we were well away from any houses) whilst ironing clothes, with the back door wide open. As I look back, I realise how unwise it was to have the back door, not just unlocked, but flung open. Ah, the folly of youth! Oh well, I wasn’t confronted by burglars, nor did I suffer anything worse than a few moths coming in because of the light. Obviously Fate didn’t feel very tempted by my actions!

Since retiring from work early, I have often noticed that I don’t feel like going to sleep at a ‘normal’ time. However, I don’t necessarily heed that inner voice but do go to bed at a reasonable time. Not this week, though. I began the week with a few days of moderate fatigue. After a couple of days I realised that, as the day turned to evening, the fatigue would begin to lift slowly. This meant that by late evening I was feeling I had some energy that could be used. I have been known to do vacuuming when I feel like this late at night – not this week, though. I am in the middle of a huge sorting and decluttering job so expended the energy on that task. (When I say ‘energy’ it is a relative term. Don’t imagine I am leaping about because you would be sorely disappointed at the reality!)

It is not easy to figure out how much of this week’s fatigue and energy peaks and troughs are due to Fibro. At a guess, I would say that they are part-Fibro and part-Old Wive’s Tale.



Back To Square One


Faroe Islands, August 2016

It feels as though I have gone back in time – well, sort of.

Let me to take you back to 2014, before Fibromyalgia had appeared on my horizon. My mother had finally moved into the retirement complex that was her idea of Utopia. Leading up to the move, on the Monday evening she had graciously (hmm, my tongue was firmly in cheek for that particular statement!) granted me special dispensation to begin packing her clothing, shoes and possessions. This was a huge concession on her part as it meant she was going to have to live surrounded by boxes for, oh, three days. Sorry, do I sound bitter?

Come moving day, I organised the removal men whilst trying to finish the packing, clean the flat, deal with all those last minute things that crop up and answer the phone to her, seemingly every 10 minutes. And, it was a stinking hot day. I do not and have never coped well with hot weather. The following fortnight continued to be excessively hot, with wall-to-wall sunshine. I was getting up at 5 o’clock every morning so that I could try to clean the flat properly before the day became even hotter. During the day I would have to take my mother out so that she could buy lots of new stuff for her new home, then, come the evening, I would do more cleaning and unpacking. After two weeks of cleaning, unpacking, sorting and so on, I finished. Phew.

I went home and, within a couple of weeks, was hit by a chest infection. After several weeks of the myriad joys of a chest infection, and almost as many courses of antibiotics, I was still suffering chest pain. I also had pain in the thoracic region of my back, which I had not previously experienced with a chest infection. Not only that, but I was totally exhausted: I was sleeping for hours during the day, as well as through the night. After a month or so, the Amazing Dr. A diagnosed Fibromyalgia.

I spent most of September, October and November asleep. Not dozing in a chair, but asleep lying on the sofa. (I don’t like going to bed during the day unless I really have to.) And, now, I feel as though I am in a time warp as I seem to be sleeping an awful lot of the time. Groooaaaaannnnn. Actually, I probably haven’t been sleeping quite so much as in 2014, but the amount of sleep does seem to be increasing this week. I have been able to do less and less during the past few days.

Not very long ago, I was able to do quite a bit. Even on a bad day I would be knitting, sewing or on the internet during the time that my body needed to rest. Now, however, things have changed. I still knit, but can only do a few rows in any session. I can do a bit of hand sewing, but only for 20 or 30 minutes. But… I now spend quite a while doing nothing (apart, perhaps, from watching trashy television). It’s a sobering reality, how little I can do. I still hope that this level of fatigue is temporary, that this Fibro flare will calm down, but it’s becoming more difficult to believe it.

I am at a stage in life when I should be enjoying myself. I have few responsibilities or obligations and I don’t have to work. I should be seeing, doing and learning new and exciting things, going out with family and friends, living the life I dreamed of. I shouldn’t be falling asleep at the drop of a hat and struggling to make sense of simple things. ‘Snot fair! I don’t like it!


You Can Either Laugh Or Cry


Bossymamma’s ugly feet!

The unpleasant photograph at the head of this post may give you a clue as to the subject of this week’s rant. Yes, I’m going to talk about Fibro Feet but, no, I’m not going to talk about the pain. Instead, I shall share with you the latest pleasure (?) that Fibromyalgia has shared with me.

Actually, and probably unsurprisingly, it isn’t a pleasure. Instead, it’s an absolute bl**dy nuisance! I’m really rather surprised by it and both of my sons will likely think that it is hilarious.

What is it, you ask…

Well, believe it or not, my feet have become very much more ticklish! Yes, I know, it sounds daft, doesn’t it? But it’s true!

My feet have always been ticklish – all my ##years. In fact, for most of my adult life I have been unfortunate enough to be able to tickle my own feet. You thought that wasn’t possible, didn’t you. Well, I’m here to tell you that it’s true: a person can tickle their own feet. Many times I have almost leapt off the bed whilst trying to put on tights because I’ve touched my foot in a certain way. It’s no joke, I can tell you.

And now, it’s even worse! I am really struggling to put on my shoes or slippers. As soon as my foot touches a part of the shoe or slipper, I almost jump out of my skin. As far as I can tell, I’m not doing anything different when putting on or taking off footwear but, my goodness, the reaction of my tootsies would make a liar of me. No more putting shoes on in a hurry and making a quick escape. Oh no! It’s more like one of the Ugly Sisters trying to fit into Cinderella’s glass slipper! Got time to spare? Just watch Bossymamma trying to put her shoes on!

* And in a note to my sons and grandchildren: keep away from my feet!!!


Getting Twitchy


Part of an FPR masterpiece. (It is far better than this photograph shows!)

A new phenomenon has appeared on my Fibromyalgia (and ME/CFS?) journey and it has made me quite twitchy – literally, twitchy.

I have had intermittent bouts of Restless Legs Syndrome (RLS) for some time but now there’s a new kid on the block. Ladies and Gentlemen, please give a huge welcome and a massive ‘hello’ to muscle twitches, tensing of muscles and muscle spasms. I would ask them to take a bow but I don’t want to irritate them.

Involuntarily, the muscles in my body suddenly go tense for a couple of seconds or more, then most, but not all, of them relax. It’s those that don’t relax that have been causing problems. From being simply tensed, they then go into spasm. Yikes! T’ain’t nice! When they spasm the pain makes me yelp. The spasms occur in my calf muscles. When one happens my leg feels sort of paralysed. I don’t just mean that I can’t move the muscle (which, of course, I can’t), but that my lower leg goes numb. I know that sounds contradictory but, whilst I suffer pain from the muscle spasm, all feeling in the remaining part of my lower leg disappears and it just feels dead. I, or sometimes FPR, have to hold and support the calf muscle briefly, which seems to be enough to stimulate the muscle into relaxing – at least, it has up until now.

There doesn’t seem to be any particular stimulus that sets off the whole-body tensing so I don’t know what is best to do to try and avoid it happening. I find the experience rather unsettling which, I suppose, is due to its involuntary nature. Probably that is because it is me lacking the ability to control that action. It can be scary when you know that your body is doing something you have no control over. If I believed in alien beings I might be tempted to posit that my body had been invaded by one – but I don’t, so I won’t. Hmm. Must just be my body being alien, then, mustn’t it?

Gymnastics Competitions


Taken by me at Taronga Zoo, Sydney. August 2013.

This week I splurged many of my precious spoons (Spoon Theory) on just one task: gymnastics. Specifically, jumping through hoops. More specifically, jumping through the particular hoops one has to negotiate when applying for a Blue Disabled Parking Badge (“Blue Badge“).

I first began researching eligibility for a Blue Badge several months ago. I don’t fulfil any of the criteria to automatically qualify for a Badge so I wanted time to think about and prepare my application. It’s a funny thing, part of my rôle as a Financial Assessment and Benefits Officer, was to complete countless forms of many different types. I used to joke with clients (I refuse to call people ‘Service Users’!) that on my gravestone would be inscribed the words “She could fill in forms” because I spent so much time filling in all those black boxes. You would think that applying for a Blue Badge for myself would be a doddle, wouldn’t you? Well, you’d be wrong. In common with many other people, when faced with an important form to complete regarding my own circumstances, I become really anxious and lacking in confidence. And, my goodness, did the Blue Badge application form do that for me…

I’m not sure of the reason for my anxiety being so acute. I think it may have been because I was worried that if I was refused a Badge, I wouldn’t be permitted to make another application for quite a while. The boundaries of my world have shrunk considerably over the last few months. I have lost a lot of confidence in myself and my ability to cope alone when I go out. I panic at the thought that I won’t find a parking space very close to where I need to go. Having had several falls and near misses, it feels as though I am more likely to fall than not whenever I walk outside. The whole situation is making me increasingly fearful of going out alone. I really do feel that I should have a Blue Badge.

I actually began the application process for a Badge several times, but I didn’t finish it. I would save what I had done online but then not complete it within the two week limit. I kept drafting and re-drafting my replies to two of the questions, worrying over them, asking FPR to read them and asking his opinion. It was a very stressful process. However, I finally screwed up my courage a few days ago and completed the entire form. And I even submitted it! I received an acknowledgement and an appointment for my assessment at the end of June. I printed a copy of my application, as I like to be able to see what I have written on official forms. Also, I wanted to send a copy of my application to the Amazing Dr Azeer. He and I had discussed my applying for a Blue Badge and he had said he would be happy to support my application. I felt it would be wise to send him up-to-date about my condition as I have deteriorated since my last consulation with him. I have been terribly efficient and written to the Amazing Dr Azeer, sending the copy.

Now all I have to do is wait for my assessment – and hope like mad for the decision to go in my favour. Fingers crossed!

Downs and Ups


Some Downs and Ups in Norway

You’ve doubtless heard the saying that what goes up must come down, but the opposite is also true: what goes down must come up. Well, that’s certainly the case when I fall!

Had I mentioned, previously, that falling is my latest hobby? It must be because it keeps happening, with disappointing regularity. I thought I had gotten away with it when FPR and I were in Devon at the beginning of this month, because I didn’t have a fall. I had fallen on our three previous holidays, so you can see why I half expected to take a trip on our latest trip.

It’s OK, no-one needs to worry, the long-awaited fall happened yesterday. Actually, I say no-one needs to worry but I was a little concerned because I wasn’t even walking when I went down. What happened was that my balance went and I dropped like a stone: flat on my back. It’s a funny thing, whenever I take a tumble, I don’t put my hands out to break my fall. That’s not a new thing. I remember a couple of falls which happened more than 15 years ago and, even then, I didn’t try to break my fall by putting out my hands. Hmmm. Weird.

Anyway, returning to yesterday’s gymnastics…

Luckily, FPR was with me and, even better, he didn’t immediately try to help me up. It is something that he and I have discussed: how, when someone falls, the automatic instinct of well-meaning people is to try to pick them up straight away. It is so kind of people to want to help but… please don’t rush to get someone up. For a start, when someone takes a tumble, they (I’m saying ‘they’ because I don’t want to muck about with her/him, s/he or any other description) need a few moments to gather themselves. I know that when I throw myself on the ground unexpectedly, it’s a bit of a surprise, or even a shock, and it winds me, both physically and metaphorically – and it takes a few moments to recover from that, apart from anything else. It also takes a bit of time to figure out what hurts and whether anything might be broken.

OK, so then we get to the interesting bit: getting oneself upright again.

This is not straightforward when one has a disability. One’s ability varies from day to day. Some days I can definitely manage far better than on other days. It means that I am likely to have to try different ways of getting up. Now, I have to say that FPR is very good when I am trying to right myself: he doesn’t try to get me up the way he thinks I should. Instead, he listens to what I say I need to try. I’m sure it must be very frustrating for him when I don’t try something that I have done on other occasions, but he takes it very well – for which I am grateful. Not only does he listen, but he does the things I ask, in the way I need.

Yesterday, a young woman rushed over to us and helped. She was very considerate, certainly helpful, and kind. She even offered to give me a lift home. It was lovely that she came over, also that she listened and acted on what was needed. What none of us realised was what would happen when I was almost upright: my balance went again and I narrowly avoided landing on the deck for a second time!

On our way home, I told that FPR that I shall have to ensure I have a walking stick with me when I go out. I don’t have a limp, it’s to help me keep my balance. I also said that, when I am getting up from a fall, I need him to hold my arm so that I don’t lose my balance again.

You know, the problems with my walking are disappointing and have brought all sorts of things to mind. However, I hope that I will manage to retain my sense of humour. After all, if I don’t laugh, I might end up crying – and I don’t really want to do that.